Cancer Selfies

I'm going home

Today I left Elliot Lake and returned home to Balm Beach, Ontario. Since we departed early in the morning on June 8th, I've only seen Thomasin for around half an hour. I adore Annie and Bessie, my Poodle Pals, and don't know how I'd have handled the last month without them, but I'm overjoyed and relieved to be with my cat again. And she's never been this affectionate. I know I'll eventually have to leave her again, but until that day we're together.

From the comments

James Petrosky: My incision still has a lot of healing to do, and I'm still restricted on how much I can lift, and the motions I can make. If I were planning on returning to work, I'd still be off for two months.

Oncologist update

I never write these ahead of time. I tried once or twice, but I could never get the tone right. I almost always plan in my head, but I end up finding something that feels better while writing, and I've been happy with the results. Today was different, I've been writing today's update since I woke up from surgery. Instinctively, I knew what I wanted to do. And I'm very happy with it, and someday you'll all get to read it.

But not today, because it was a piece that came from a doomed place. And I don't feel doomed, immenantly at least. Today I spoke to my medical oncologist, my prognosis has not changed in light of the failed surgery and newly discovered tumor. The surgical oncologists had given us a much shorter estimate, which is why I was so sure and have been so defeatist as of late.

Surgical oncologists see a lot of cancer, and surgically treat a lot of cancer, and read the notes and examine the imaging results for a lot of patients, but they don't do the day in, day out work of treating cancer. That is the job of the medical oncologist. And the surgeons told us as much, but you work with the best information you have available, and until 13h00 today, that estimate was as low as three months. I was 35 when I was diagnosed, in an instant half my life evaporated. One year is a tiny fraction of that, but it's so much more than mere months.

With cancer, things always move fast. I'll have a CT scan in the next few weeks, to see how much the tumors have regrow over the past three months. I'll have to have blood work done. And then I see my oncologist on August 3rd. It's possible for chemo to start the following week.

The way I did chemo last time was not the typical way that particular cocktail is done, because we were aiming to get to the HIPEC surgery. The surgery may have failed, but our treatment plan was a success. But I now have no surgical options, just chemotherapy, and we'll likely be following the more typical treatment plan of three months of chemo (six cycles), three months rest. This will continue until FOLFIRI+Avastin is no longer effective against my cancer. We haven't discussed what happens then.

Prognoses are probabilistic in nature. And probability is a thing many of us have difficulty with. If I only make it to ten months, or if I make it to two years, it doesn't mean the prognosis was wrong. My cancer is extremely rare (literally one in a million), so everything, from treatment plan to prognosis, is based off of colon cancer information. Not only is my cancer rare, I am decades younger than the average person at diagnosis, and my cancer is more developed than the average case at diagnosis. 1-1.5 years is the best estimate I've got, and I'm running with it and planning around it, but it isn't a guarantee.

From the comments

James Petrosky: I didn't really make something as clear as I wanted to. I've been very stressed about not being on chemo the last month. But I was off chemo for two months before the surgery, and now one after, which is the length of the three month break from chemo that's typically part of the treatment plan. So I haven't actually missed any yet, I've lost no ground to the cancer that isn't part of the plan, and therefore part of the prognosis. So not only is this (qualified) good news, it's good news and I can stop worrying for a while.

Exhaustion is bad for mortality salience

Cycle 16, Day 12

Gang, I'm so tired. Tired of counting cycles. Tired of the side effects. Tired of living in a sort of constant existential terror.

I took a walk to the beach, roughly 400m, and found myself lightly winded when I got there. Walking back was the same story. I've been doing some basic yardwork, collecting leaves that fell on the patio stones mainly, and after three hours of medium-light labour I'm so exhausted I need a nap. I've never been the most fit person, but even at the peak of my cancer pain on the late summer I was still able to work (medium-heavy labour) fifty hour weeks without wearing myself out. It's a lot to get used to. And to add further insult, my nose has been running constantly for the last month. It's a known side effect, but it's gross and frustrating.

For the sake of my mental health, I need surgical dates to look forward to. I'm hoping I hear something this week

From the comments

James Petrosky: Most of the time I'm pretty comfortable with my mortality, but the anxiety and depression and exhaustion have a way of eroding the peace I've made and found.

James Petrosky: My personal nurse has been a tremendous help, though

Cathy:

End of course one CT scan

Cycle 6, Day 6

Today I visited the Midland hospital for a CT scan. Next week I should hear back about the results. This is how we're going to learn how well the treatment has been working.

I'm excited, and cautiously optimistic, for the results. I need to remind myself that I'm on a palliative chemotherapy cocktail. That the goal is quality of life, not to rid me of the cancer. The best case scenario, the scenario I hope for, is that existing tumors have shrunk and that no further spreading has occurred. None of that is guaranteed, but I feel good, physically and mentally, and I'm allowing myself the risk of disappointment on this.

I have an appointment with the surgical oncologists at Mt. Sinai in early January, they are much more experienced at interpreting this sort of scan than the medical oncology team in Barrie is, so even though I'll learn a lot next week, I'll still have to wait another month before I'll learn a fuller story.

Good days pay for the chemo days

Cycle 3 Day 10

We're getting what's likely to be a final reprieve before the winter descends upon us, and I intend to take best advantage of it.

Back at the start of this, I said the currency you spend is the feeling of normal. We left normal behind months ago. The new currency is the little experiences I can jam into my good days. Seeing a raccoon, petting a dog, talking to someone I haven't seen in a while (or have, and want to talk to again), interacting with all of you. Little things. And I need to save up enough so I can pay the toll and make it through The Chemo Days.

PICC install day

The PICC line, for those (like myself) who were unaware, is a line inserted into a vein in my non dominant forearm that extends to the heart. I'm glad I was ignorant until minutes before the procedure, because that is the stuff of nightmares for me, even if the actual result felt, at worst, a bit weird

On the types of chemotherapy

There are many sorts of chemotherapy. Which makes sense, cancer is a collection of diseases of various tissues.

There are many sorts of chemotherapy. Which makes sense, different tumors and different cancers are going to have different vulnerabilities.

There are many sorts of chemotherapy. Which makes sense, side effects are an important consideration, and the risks must always be balanced with the benefits of the drugs.

There are many sorts of chemotherapy. Which makes sense, some are used to prepare for surgery, or to remove the cancer completely. Others are palliative, used to prolong life and minimise pain.

Friends, my chemotherapy is palliative. Which isn't to say my oncologist has given up on me, this round of chemotherapy is simultaneously the correct standard of care and the necessary first step to get a more advanced treatment.

The PICC goes in tomorrow, and the first round of chemo starts the day after. I've never been more tired and overwhelmed in my life.

My parents are visiting this week, which is a great comfort, and they've brought my best poodles, Annie (golden labradodle) and Bessie (black standard poodle). I've saved this post for the day I got lots of good photos, maybe it'll help lighten things a touch.